Chapter 1: Understanding Genetic Testing

We’ve all encountered the scene: a newborn enters the world, and the mother anxiously inquires, “Is it healthy? Is everything alright?” The nurse reassures her, counting fingers and toes, before declaring, “Yes, it’s a lovely baby boy/girl/non-binary child.”

However, a more discreet procedure follows—the heel prick test performed on the infant. A small blood sample is sent off to screen for any potential genetic disorders that might affect the child in their early life.

In the UK, newborns are screened for nine specific conditions, including the metabolic disorder Phenylketonuria, which, without a low-protein diet, can lead to severe brain damage. As genetic markers for various diseases become more identifiable, the demand for comprehensive screening of children continues to grow.

While I recognize the potential benefits of alleviating uncertainties regarding hereditary diseases, I also foresee significant ethical dilemmas. For instance, if someone discovers they carry the gene for Huntington's Disease and decides not to have children, they may inadvertently reduce the prevalence of carriers in the population.

Yet, what if these screenings lead to more severe measures, such as mandatory testing before birth? How soon could it be before every fetus undergoes a complete DNA profile analysis prior to the legal deadline for abortion? Will we see laws that override parental consent for terminating pregnancies based on certain health criteria?

The possibility of losing our autonomy over which genes we pass to the next generation raises profound ethical questions, and it seems few politicians prioritize addressing these issues.

This scenario isn't merely hypothetical; we’ve glimpsed its potential consequences. The 1997 film "Gattaca," directed by Andrew Niccol, delves into this very topic. In the film, a genetically disadvantaged man assumes another identity to pursue his dream of space travel. In this advanced society, identity verification relies on DNA tests for everything from building access to job applications. Those conceived naturally face discrimination as they are seen as inferior. The journey into parenthood starts with discussions about desirable genetic traits with a designer.

At the time, these notions felt distant and far-fetched. Now, over two decades later, they seem all too real and alarming.

In November 2019, former UK Health Minister Matt Hancock announced a pilot initiative for the DNA sequencing of 20,000 newborns, with plans to make this practice a requirement for all children born in Great Britain. This means every child born will be subject to ongoing monitoring via a massive government database, raising concerns about a presumption of guilt rather than innocence.

It follows logically that law enforcement could utilize portable DNA testing devices to evaluate individuals’ predispositions to aggression or to ascertain whether they have left biological evidence at a crime scene. You might think that having never committed a crime means you have nothing to fear, but history shows that such systems can be corrupted. A single erroneous marker could drastically alter your life.

Some British scientists have voiced their opposition to such measures, citing both biological and psychological implications. For example, being aware of carrying genes for a serious illness from birth could severely impact mental well-being. Francis Elmslie of the British Society for Genetic Medicine argues that DNA sequencing should be optional at eighteen, rather than imposed at birth. Dr. Martin Brunet, a GP from Surrey, echoes this sentiment, highlighting the financial ramifications.

This isn’t the first attempt by British officials to create a national registry. Previous efforts to compile all medical records into a national database faced significant backlash from medical professionals, resulting in a compromise that allowed individuals to opt-out, albeit through a cumbersome process. Many took advantage of this option, rendering the database incomplete.

Given that our government has previously sold personal data to the highest bidder, I’m relieved to have opted out; otherwise, my life insurance costs could be exorbitant.

Those who fell for the marketing surrounding paid DNA ancestry services have already provided genetic information that is now stored and sold to third parties, all while paying for the loss of their privacy.

As we get caught up in distractions like Brexit or climate change, we often overlook these subtle threats to our personal freedoms. It's imperative that we assert ownership over our genetic data. Any efforts to collect, store, or monetize this information must be voluntary and justified, rather than creating a society divided by the elite traits dictated by our DNA.

If the UK government proceeds without resistance, it could set a dangerous precedent for other nations to follow suit. This potential for genetic elitism could escalate into a global issue in just a few years. Will you take a stand against this infringement on our rights, or will you allow those in power to categorize us like cattle in a vast information exchange?

Chapter 2: The Implications of Genetic Testing

The first video, "How Much Are Your Genes Worth?" featuring Velislava Petrova at TEDxLancasterU, discusses the financial and ethical implications of genetic testing, urging viewers to consider the true value of their genetic identity.

The second video, "DNA Test Kits: Are They Worth My Money?" from Talking Point, examines the reliability and worth of DNA test kits, providing insights into their benefits and drawbacks.